By Curt Collier
This was not my first pandemic. Between 1989 and 1990, a rubella (German measles) epidemic erupted in Mexico. It is estimated that 89,163 people were infected with the virus, mostly children between the ages of 5 to 15, and 8,150 died of the disease in slightly over one year. The pandemic was halted by a modern-day miracle: an intense MMR vaccination campaign by the Mexican government. The fire had been put out…but the damage had been done.
In 1992, I graduated with a master’s degree from Texas Tech University and became an audiologist. Eventually, I purchased an existing audiology practice in Corpus Christi, and hung up my shingle. Corpus (as locals call it) is a lovely city by many accounts, but an extremely poor area….as is most of South Texas. To make ends meet, I took on additional contracts at the Corpus Christi State School, a sprawling campus with hundreds of residents with moderate to severe cognitive impairment. Serving this population for six years was life-changing, to say the least. The vast majority of the residents were barely ambulatory, non-verbal, and often afflicted with other co-morbidities.
Adept at reading subtle cues
Working to test such a challenging population, I became better adept at reading the subtle cues that allude to whether sound is heard or not, and because of this I became pretty good at pediatric audiology, as well. As my reputation grew, several other facilities and hospitals asked for my service, and by the end, I was rushing from clinic to clinic—from Corpus to Laredo, then down to McAllen, on to Brownsville, then up to Corpus Christi, providing patient services over an area the size of Massachusetts.
It was at these school clinics along the Mexican border that I encountered waves of children impacted by the epidemic raging a few miles away. Rubella can be insidious, impacting some adults only slightly, as with COVID-19. However, the disease ravages fetuses in the womb, causing a host of problems, including deafness. Luckily, in their entire careers most audiologists discover only a few children who are born severally hearing-impaired—about two to three of every 1,000 births. I was diagnosing 10 an academic year. Nearly all were Mexican children brought by their parents across the border in search of explanations for why their children were not reaching developmental milestones like that ever-important first word.
All the signs of grief
Telling a parent their child is severally hearing impaired (or facing any medical diagnosis) is not an easy task. Through training, you recognize all the signs of grief, from dismissal to anger and denial, bargaining and so on until finally, hopefully, acceptance. Children need language in order for their brains to fully function. As a species, our verbal language is so entwined with our cognition that often hearing-impaired children struggle with other areas of learning as they age. Early diagnosis and intervention is key so that youth meet these cognitive milestones, which impacts so many other issues, from self-esteem to career development.
Being a hearing-impaired, undocumented child along the Mexican border came with additional challenges, as well. Some of the parents became extremely angry at me. Some disappeared, and never followed through with recommendations. Many parents balked at my urging that the child get hearing aids as soon as possible and be placed in pre-school or early-intervention programs. It wasn’t that they necessarily doubted the diagnosis…they came to understand that their child couldn’t hear. They just felt that to really love this child was to keep them at home away from a cruel and intrusive world, a common cultural choice in that region of the world. I argued that to love these children was to get them services, but I was cognizant that this was their child.
The science was clear
Our interventions came at a huge cultural cost. I knew all of these children would be raised learning a language different than their parents’…. not only because instruction was in English, but American Sign Language (ASL) is not the same as Mexican Sign Language (LSL coming from Spain). What I valued was what the dominant culture valued. But the science was also clear. We are born prewired to learn a language, and that must come in some organized way, auditory or visual, or it will have severe ramifications.
I spoke in Austin for services and at conferences of my professional association and advocated for early testing and intervention regardless of residency. Whether or not you feel a child of another nation should be provided services, I knew that if the youth before me didn’t receive early support at a modest cost, that the resultant young adult would cost this nation (and this person) so much more. How do you fairly weigh who should receive life-improving services and who should not?
Some choices are murky
Choosing to act is often difficult, the way murky and laden with self-doubt. But some choices are clearer than others. I worked with clinics that pushed to get parents and children immunized, which as you can imagine came with its own set of challenges. To stem the flood of families ravaged by rubella we simply needed to inoculate more families along the border and beyond, a goal that was reached across Pan-America by 2015. Rubella has been mostly eradicated, at least for now, but even so, there were those who vehemently railed against Western medicine.
Fears of vaccinations, international politics, cultural divides, lack of resources, lack of staff—these were just some of the challenges I faced as a young audiologist. I still see these children’s faces, still hear their parents crying and arguing with me, but also remember the joy of seeing a child learn and just be a child who was born differently abled. We adults simply had to move beyond our fears, our prejudices.
Acting on the best wisdom we can find
Ethical challenges can be so complex, especially with so many things we value at odds. Regardless, we make choices to act based on the best wisdom we can find, garnered from many sources. That doesn’t mean we still don’t have doubts. I based my decisions not simply on what I thought was right due to my training as a clinician, but in believing that the best I could offer was to help ensure that the child had the opportunity of choosing what life they wanted later on. They could decide to participate in the hearing world or the deaf, equally valuable, and both better than no language at all.
Many of these youth eventually dropped out of school. Did we fail them? I think we did, as this often perpetuates a cycle of poverty. But some persisted and had the freedom to make other choices, and some of those choices are what we in the West would label “successful.” Despite the murkiness of all of this, I would do it again.
Curt Collier is leader of the Ethical Culture Society of Bergen County.